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    • #15927
      Libby
      Participant

      I recently purchased an oximeter to keep track of my oxygen levels which usually hover between 92 and 94%. I know this is low but not alarming. I’ve been experiencing some mild shallow breathing and heaviness in chest, though upon research realized than oximeter won’t necessarily show low oxygen levels at my time of shallow breathing because the oximeter only measures oxygen in my blood, not what’s going out to my body, which makes sense. Anywho, its nifty to have an oximeter regardless. It shows that my perfusion index is pretty low, at 2.5 to 3%. Anyone else measure these things regularly or have knowledge to share?

    • #15929
      Kathleen Sheffer
      Participant

      Thanks for sharing, Libby! 92-94 percent was my normal with PH so I’m not alarmed. It’s good to get comfortable with your pulse oximeter when you are feeling relatively healthy. I used mine the most when I had a cold. My sats would drop into the 80’s with pneumonia, making it important to have the baseline for comparison. I’ve found that different models are a couple points off one way or another. I swear the ones they use in the clinic are calibrated to read a few points lower! As long as the one you’re using is consistent it can help you keep track of how your symptoms impact your vitals. I do better having a number to attach to sensations!

    • #15930
      Libby
      Participant

      Thanks for the response Kathleen, know anything about the perfusion index?

      • #15933
        Kathleen Sheffer
        Participant

        Honestly, no. Maybe you have a fancier monitor than I do. Mine only shows me %SpO2 and pulse rate.

    • #15934
      Brittany Foster
      Keymaster

      Hi Libby,
      Going off what Kathleen said too, I feel some type of relief actually when I am feeling “off” or feel more short of breath or get the blueish tint to my lips and find that my oxygen levels are lower than usual. A number helps me to confirm what is going on with me and to distinguish the short of breath feeling from something like a panic attack (which actually makes me hyperventilate not hypoventilate) Before getting diagnosed and realizing that my oxygen levels were low a lot of doctors thoughts I had “just anxiety” but turns out that I didn’t. Sometimes when I’m questioning my own judgement or when the thoughts of “oh it’s just my anxiety” pop up, I can prove myself wrong with my pulse ox and be like “oh okay my oxygen is reading low so time for some oxygen supplementation !”

      As far as the perfusion goes to the pulse ox, circulation through the body and to the extremities could effect the oxygen being delivered to the peripheral of your body. This could also sometimes give a low reading on the o2 sensor but would be more of a perfusion and blood flow limitation. I’m curious if you have ever had feelings of dizziness of light headedness upon standing and have doctors ever checked your blood pressure with sitting to standing? My blood pressures drop with activity and drop with changing positions because of the blood flow issues in my body. The circulation and perfusion just isn’t strong for me.

    • #15937
      Libby
      Participant

      Brittany – that’s exactly why I purchased the oximeter, so I could see if my stats changed at all when I am feeling off! I absolutely get times of light headedness, or sometimes seconds of confusion of what I am doing upon sitting up or laying down transition!

      • #15938
        Brittany Foster
        Keymaster

        I would get the same way with changing positions too Libby. I would ask your docs (even a primary care could do it) to just check out your bp levels when changing positions and let them know of this symptom. I had a whole test done called the tilt table test that measured blood flow and what happened with my circulation when I went from laying flat to standing and my o2 dropped and my bo also decreased and the blood flow going to my head stopped for a moment and I blacked out. It was pretty scary but gave the doctors a lot of info about my perfusion and circulation.

    • #15939
      Libby
      Participant

      That is so interesting, but scary! I just might mention it next time I see my PCP!

      • #15941
        Brittany Foster
        Keymaster

        It honestly wasn’t as bad as it sounds. To suspect something going on the primary will just take the blood pressures manually with a regular cuff and have you change positions and see what happens and ask you about any symptoms. Keep me posted if you make an appointment and what is talked about! Reach out or direct message me any time.

    • #15984
      Robin Webster
      Participant

      My pulse oximeter just broke after about 5 years of use, and I’m looking into replacing it. I was very surprised to see some fairly affordable ones that are bluetooth compatible and have software so that you could actually get a report on your computer. It says you could print it out or even send it to your doctor. What I had before was a finger monitor I kept in my purse for occasional checks. Now I see these ones you could wear over a period of time on your wrist and, for instance, see what it was at night, just like during a sleep study. Since I have nocturnal hypoxia and have to wear oxygen (only at night) and I am not always compliant with it (because I can’t get any good sleep with it on) I am very interested to monitor that. Does anyone have one of this type of oximeter who could give feedback on whether or not it’s worthwhile? My finger one didn’t show perfusion index, and I don’t know what all these fancier ones show.

      • #15986
        Brittany Foster
        Keymaster

        Hi Robin,
        I have seen those actually ! I think they are pretty expensive though. Maybe if you talk with your doctor about that specific type of pulse ox, especially if you are experiencing nocturnal hypoxia, they could try to get some of the insurance to cover the cost of a good one. I know these are the ones that they give to patients when they want to test their oxygen levels through the day to get some to qualify for oxygen at home. The ones that they give out are usually only 24 to 48 hours, but I would definitely be interested if insurance companies were willing to pay for some of it, especially if your doctor gives your diagnosis code and all! I know it can be such a pain to wear the mask at night and get used to that. It took me a really long time to get comfortable with mine but eventually I got there and it improves things so much for me the next day. Right now I have been stuck in a rut with not wearing it because of vomiting and reflux which will hopefully be surgically helped soon!

    • #15996
      Valerie
      Participant

      Can I join the topic with a question? I want to ask: what pulse oximeter readings do you consider critical? What indicators are considered to be low and cause anxiety? And what do you do if the readings are lower than necessary? Than you raise level of oxygen (except oxygen cylinders, of course)?

      • #15998
        Brittany Foster
        Keymaster

        Hi Valerie,
        You are definitely allowed to follow up with questions on any of these forum topics. To answer your question the best way I can, and from personal experience, it all depends on what your doctors would consider “low” for you when measuring your oxygen levels. For someone who is used to an oxygen level of 98 to 100 %, they may feel the effects if their levels start to drop into the low 90s. For me, my normal oxygen levels on exertion are in the upper 80s but if it starts to fall below into the lower 80s or high 70s then I am advised to turn up my oxygen liter flow. Have you talked with your doctors about this? are you on oxygen too? If so, it would be worth asking exactly what you are allowed to titrate your oxygen up to and when to call the doctors if it doesn’t improve. Sometimes just more oxygen and using my bipap is all I need, while other times if the oxygen levels don’t improve then I would need some additional testing at the hospital or at my clinic.

        • #16020
          Valerie
          Participant

          Brittany,
          Thank you for a answer! I didn’t think that for different people there are different “normal” oxygen levels.
          I don’t use oxygen. I only found out about oxygen tanks only a year ago, when a pregnant colleague was looking for an oxygen tank to make it easier to breathe. The fact that portable concentrator is used by patients diagnosed with PH, I learned only here on the forum. The doctors never (never once) mentioned that I might need oxygen. I didn’t do any tests. In addition to electrocardiogram, ultrasound of the heart and x-rays lungs I didn’t. You told me about the pulse oximeter, so I’m thinking about buying it (but it’s hard to find it and it’s not very cheap). Libby asked here a question about pulse oximeters, and I thought, what do you all do when you see bad readings? I mean, what else can you do besides use portable oxygen?

        • #16021
          Brittany Foster
          Keymaster

          Hi Valerie,
          I was given the oxygen by my doctor because it is treated as a prescription and needs approval in order to qualify for it here in the United States. Not sure if it is the same where you live? For here, many will qualify for oxygen if their levels drop below 89 (which is considered low). With my particular combination of conditions, I have always had a lower reading when walking around, it just needs monitoring with the pulse ox. I would ask your doctor’s office if they would be able to give you a “walk test” where they measure your oxygen levels using the pulse ox and record how well your oxygen levels are doing during a 6 minute time frame. This will give them a better idea of whether you need oxygen with activity or at rest. In my particular case, I need it with activity because my levels drop within a minute of walking around. Because it has been this way for me for awhile, I’m not as aware of the symptoms or bothered by the low oxygen anymore. It’s almost as if my body has adapted to it!

        • #16037
          Valerie
          Participant

          Hi, Brittany!
          I will definitely follow your advice and at the next appointment I will tell the cardiologist about a “walk test”. But still, I strongly doubt that he will advise me to use oxygen, even if the indicators insist on it. I’m trying to use the available drugs to get at least a small amount of extra oxygen (for example, “Coenzyme Q 10” or “l-carnitine”). Now I managed to get “Hypoxen” (I was very afraid that the side effects will appear and the purchase will be in vain, but so far everything is fine). I know it’s not enough, but it’s something. If I understand correctly, shortness of breath or color spots in front of the eyes are manifestations of lack of oxygen, isn’t it? What do people do in case of these manifestations, if there is no portable oxygen? Maybe some special rhythm of breathing or something else? Are there any available ways to increase oxygen levels?

    • #16005
      Teresa Konkowski
      Participant

      I bought a pulse ox a couple years ago at the suggestion of my Pulmonologist. I was undergoing a 6 minute walk test at hospital for Dr when tech slipped a pulse ox on my finger. She choked and went ballistic when it read mid 80’s. I knew that that number could not be good. Everything went fast. She told me to stand against wall while she ran for O2. She took forever to return. She admitted she was having difficulty finding a hose coupling for the tank. It was a huge scare but it made me understand and identify my body’s warnings. I now know my “normal” Pulse Ox values are in low 90’s. This particular scare made me carry a Pulse Ox and be Rx’d oxygen. They come with me whenever I leave the house.
      I have a been diagnosed with an Myleoproliferative Neoplasm Polycythemia Vera since age 5. I underwent several PEs in the last 25 years and diagnosed with sleep apnea too. In the last few years I have been diagnosed with PAH/CTEPH. Drs say my scars from PEs are why I know see world reknown PAH Cardiologist. I know my personal limits including my pace, terrain/weather limits and whether or not I am up to lugging around an oxygen tank lasting more than just a couple hours. Museums and malls are out.

      • #16006
        Brittany Foster
        Keymaster

        Teresa,
        I totally understand about having to know your limits for your body. That must have been a scary experience for you when you were given the walk test and told that you needed oxygen. How long did it take the doctors to get you home oxygen? Are you using the oxygen tanks right now or have you ever tried a portable concentrator? Personally, I prefer the tanks but I know it can be a huge pain to lug them around to the stores and the mall , especially if you need to free up your hands ! I’m glad you are paying attention to your body and giving it what it needs. Thats so important.

    • #16099
      Elaine Wanhala
      Participant

      I remember my first visit to a pulmonologist and had a 6 minute walk test. My O2 sat went to 84 quickly and the nurse stopped the test. They put me on oxygen right away in the office. It took a couple of days for me to get home oxygen. I was in shock. It had never occurred to me that I would ever need to be on oxygen. That was 3 years ago. My question is what is a good brand of pulse oximeter. The problem with mine is it takes a long time for the reading to show up. Much longer than the ones used in a doctor’s office or at my pulmonary rehab class. It cost about $20 at Amazon. Does anyone have a recommendation for a good brand? How expensive do they need to be to work well?

      • #16117
        Brittany Foster
        Keymaster

        Hi Elaine,
        I have a CVS brand one and have seen it used at doctor’s offices and have compared it to the ones in the office and it works pretty well. I think I paid around 30 dollars for it which isn’t that bad especially because it lasts awhile and the batteries don’t even need to be replaced that often. I would look into a good one if you’re thinking about making an investment and even just compare it to the ones that your doctors use or ask the pharmacist about specific brands that they would recommend. I’m sure they would know too. With movement and exertion sometimes it takes awhile for the pulse ox to register. I always make sure that it registers at my resting rate first and then I start walking if I want to gauge my oxygen levels with activity.

    • #16195
      Valerie
      Participant

      Please tell me one more thing. I began to explore a lot of information about the pulse oximeter (with the idea of buying it). Now I’m wondering: how does hemoglobin affect the pulse oximeter readings? Could it be that because of the high hemoglobin in the blood, the pulse oximeter will be incorrect? Do you know anything about this?

      • #16198
        Brittany Foster
        Keymaster

        Hi Valerie,
        I’m not too sure about how a hemoglobin reading would impact the pulse ox reading and whether it actually does have an effect on the reading that you’re getting. Do you have a high hemoglobin/low level? I think mine is generally pretty low !

        • #16213
          Valerie
          Participant

          Hi, Brittany!
          Thank you for responding! Yeah, I have high hemoglobin all the time. When I donate blood from my finger, the nurses each time exclaim “What dark blood!” and I just roll my eyes. I read about the pulse oximeter and I realized that it reads the amount of oxygen that carries hemoglobin. But I don’t understand much, including whether there would be correct indications if hemoglobin is high? I am a perfect layman in this matter.

        • #16216
          Brittany Foster
          Keymaster

          The puse ox is usually a good measure of oxygen in the blood, but the real oxygen measurement would be from blood gas checks. Sometimes they do venous blood gas where they take blood from a vein and measure, but the most accurate would be the arterial blood gas. Have they ever checked your oxygen levels with measuring it directly from the artery or vein during a blood test? They did this for me during part of my exercise heart cath and I think they do it during most heart caths too to get a sample of co2 and o2 measurements directly in the blood. There are also sensors that go on the ears and on the forehead that measure o2 without being invasive with the bloodwork!

        • #16241
          Valerie
          Participant

          It’s all so complicated for me. In our area it is more common to hide from the patient his illness and various details related to this. So I don’t know very, very many things. I’ll look for more information about it. And I’ll ask about all this at my next cardiologist appointment. Anyway, I really appreciate your answer.

        • #16242
          Brittany Foster
          Keymaster

          Valerie,
          Definitely bring it up at your next appointment. You have every right to ask as many questions as you want and to get all the support you deserve!

    • #16248
      Jacqueline Biddle
      Participant

      I have been using supplemental oxygen for over 6 years. A pulse ox reading has always been helpful. As others have mentioned a good basic meter is available from most pharmacies, amazon, or mail-order medical supplies. Usually a pulse ox of 96 is very good for me. Of course walking distances can lower that number. At the doctor’s office anything below 92 is cause for concern. The usual way I increase my number is to inhale deeply through my nose then exhale slowly, with pursed lips, through my mouth. I continue this routine for 2 to 3 minutes or longer if necessary. Also, use the opposite side for your pulse ox reading if you are taking your blood pressure at the same time.

      • #16260
        Brittany Foster
        Keymaster

        Hi Jacqueline,
        This is all really great advice ! Especially the part about using the blood pressure cuff and the pulse ox on the same side LOL! sometimes the nurse assistants do this and are wondering why they aren’t getting a reading hahahaha. But the 6 minute walk test would definitely be helpful with figuring out oxygen needs for people who are curious about it and if they have their own monitor at home they can even test it out before going to the doctor’s office.

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